In pursuit of a meaningful life with ANCA vasculitis

Living with ANCA-associated vasculitis forces us to redefine a lot of things, including our energy, our expectations, and our sense of normal. But one of the most important and sometimes overlooked things we have to redefine is what we consider “good enough.” Because when it comes to our health and our personal journey, good enough may not actually be good enough.

There’s a moment many of us encounter in our care when the conversation centers on labs. On paper, things appear to be under control — numbers look stable, markers are “within range.” And yet, in our daily lives, something doesn’t feel right. We’re still struggling, still limited, and still feeling like we’re just getting through the day rather than actually living it. That gap matters.

If our doctors don’t fully explore our quality of life — and often they don’t, not because they don’t care, but because the system isn’t built that way — it becomes even more important that we do.

I believe we have to ask ourselves honestly, “Is this acceptable?” Not, “Is this survivable?” Or, “Is this better than before?” But, “Is this actually a life I can live in a meaningful way?”

Sometimes, good enough quietly turns into years of just existing. I’ve faced that decision more than once.

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Be willing to ask for more

At one point, I had an adverse reaction to a medication that landed me in the emergency room. My throat was closing, which was terrifying. At the same time, the alternative medications I was on weren’t holding my disease at bay in a meaningful way.

When I really stepped back and evaluated my quality of life, it was about a 3 out of 10. I could get through the day, but that was about it. I wasn’t living in any real sense. I was existing. And the thought of doing that for years was something I couldn’t accept.

My wife and I had a very real, very intense conversation about what to do next. We talked about risk. We talked about what it would mean to try the medication again, knowing what had already happened. And we made a decision together: For me, good enough was not good enough.

We chose to try the medication that now appeared on my allergy list again, with our eyes wide open. We understood the risks, including the possibility that another reaction could be even more severe and potentially life-threatening.

I went back to my doctor and told her I wanted to try again. Together, we developed an aggressive pre-medication and reaction protocol to reduce the risk.

And it worked.

For about two years, I was able to stay on that treatment. My quality of life improved to around a 6 out of 10. That was double what it was before (when my labs said I was fine, but I didn’t feel good most of the time). It was a significant shift, with more moments of living rather than just getting through.

Eventually, my body reached a point where I could no longer tolerate the treatment. But those two years mattered. They were worth it. And that experience reinforced something for me: We have to be willing to ask for more. And we need to continually ask ourselves if good enough is really good enough.

Advocating for ourselves

A few months later, a new medication, Fasenra (benralizumab), was approved for eosinophilic granulomatosis with polyangiitis. I brought it up with my doctor and said I wanted to try it.

The initial response was that it was essentially the same as what I had already been taking. But I had done the research. I understood that it had a different mechanism — one that activates natural killer cells to help eliminate eosinophils more effectively in tissue.

It wasn’t the same. And again, I found myself at that decision point. I could stay where I was — stable, but limited — or I could advocate for something better. So I pushed — respectfully, but clearly. I wanted to try it, and we did. About a year and a half later, my quality of life now hovers around a 7 or 8. That’s a game changer for me.

It didn’t happen by accident. It didn’t happen because I accepted where I was. It happened because I asked myself what was truly acceptable and refused to settle for something that wasn’t.

This doesn’t mean we chase perfection. That’s not realistic with a condition like vasculitis. But we need to create a new scale to measure our quality of life, one that is personalized just for us. We define our own baseline. We decide what “good enough” actually means for us, because numbers don’t capture everything.

They don’t capture whether we can engage with our families, participate in our lives, or experience moments of joy and connection.

So if something feels off, it’s worth asking the question: “Is this really good enough?” And if the answer is no, it’s OK to say that. It’s OK to advocate, explore options, and want more.

Because we aren’t just trying to survive this disease. We’re trying to live with it. And that is worth fighting for.

Note: ANCA Vasculitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ANCA Vasculitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ANCA vasculitis.